A Life With Holes

You may or may not have noticed that the blog has been awfully quiet for about the past week. There have been no new posts and there has been no activity on Twitter. It was as though I was sucked into a large black social media hole.

It was also the same for me behind the keyboard and the reason for the social media absence. I get Ehlers Danlos flare-ups and it’s like my life is sucked into a void. It stops. I don’t get my laptop out. There are no words added to my manuscript. There are no blog posts, no tweets. My family don’t see me as I fester under a quilt of agony upstairs.

I have no interest in being sociable. I don’t care if that offends. All I’m interested in is the pain stopping and the gloom that comes with it and hovers over me, disappearing. It takes close to a week before I’m functioning again. A week lost in a hole of time.

This was the reason I ended up closing the crime book club. I miss it terribly, but I’m reminded yet again how unreliable I am.

I now have to catch up with my word count without pushing myself over the edge and into the pain-is-too-much area. I have to give some love and attention to my poor neglected blog and I need to feel as though I’m alive again!

I hate that I have to live this way. That my life has punctuations in it where everything stops but all around me carries on, as it should. I’m missing parts of my life. It’s like someone has a hole punch and randomly punches through my timeline and I fall into each hole and have to fight my way out. It’s funny, when I’m up and ok-ish, I want to fight and do everything with as much energy as I can muster, but when I’m down those holes I don’t care about anything. The pain and fatigue suck the life force out of me and all I care about is making it to the end of the day when everyone else is also in bed and I can sleep and feel normal because guilt is the one emotion that does creep in. Guilt that my family have to live with these holes as well.

A life with holes isn’t much fun, but for now, I’ve climbed back out. I’m me again.

At the weekend I’m attending an EDS conference in London where specialists from the US are speaking about craniocervical instability and I hope to learn a bit more and make some contact.

Tomorrow on the blog there will be a Recently Read post on Snowblind by Ragnar Jónasson.

Thanks for still being here. I look forward to catching up with you and filling another of the holes that appear in my life every so often.

Thank you Corina. The episodes are hard and I love how much better I feel once I start to come out of one. Even if that’s still not feeling great it’s better compared to the hole! And yes, I’m really looking forward to the conference. I hope to be able to update everyone here. 🙂

I’m sorry! Maybe there is a balance between all-out and nothing? But don’t feel bad – you can’t help your body rebelling against you like that.
I did notice the quiet here, but trust me – not much happened this past week. And you know, you probably appreciate the pain free moments when you can do things more than any of us. We could probably learn from that.

I notice when you’re quiet and understand that you have to have time alone to help your body get over its pain. Really hope that you get some answers soon and can get some respite. I always read your blog posts and like you miss the crime club. Maybe one day it will restart xx

Thanks Steph. I really do miss the book club. Meeting up and chatting to people in real time was just great but having this hole again showed me how unreliable I am. It didn’t fall on a book club week but they have done in the past. But yes, I’d love to revive it. I’m looking forward to the weekend and to getting some more understanding of what it is I’m dealing with.

Sometimes we all need to step away, Rebecca, for whatever reason. There’s no need for apologies or guilt. You have the right to live the way you need to live. I am sorry to hear about the pain though, and I hope you get some relief and answers.

Thank you Margot. Don’t you find we put so many expectations on ourselves though? No matter what they are we are quite rigid and tough on ourselves. I particularly hate letting people down when I get ill quickly and all work just stops without warning and that’s the part that’s hard, the without warning. But I think people are starting to realise. If I’m not about, it’s because I’m ill. Not because I can’t be bothered.

I think you’re right about expectations, Rebecca. We really are hard on ourselves at times. Certainly more than we have to be. That’s probably part of the reason we feel so bad when we can’t meet those expectations. For what it’s worth, we all have a lot of respect for you and all that you.

I’m so sorry too for the pain you have to endure. But don’t even worry about your blog readers. We’ll be here when you feel able to share things and we’ll think of you when you aren’t. Life is tough many times – and for you, it’s very tough. Here’s hoping that you can learn things at your conference. Take care and best wishes. Always nice to ‘hear’ from you.

Thank you Kay. It’s so lovely to know you’re here whether I’m posting or coming back to posting after a bout of living in a hole. I’m looking forward to the conference and to learning more about the CCI so I can sort it out and take the next steps.

We do miss you, and I’m sure your writing and your family miss you too, but no need to feel any guilt about this. You do whatever it takes to manage yourself, your health and to feel a little better. I’m very sorry you have these nasty, gaping holes though, wish there was some way you could find relief more quickly.

Thank you Marina. It’s a real balancing act most of the time as it is so when I fall down the hole I tend to just succumb and it’s not pretty. But then when it starts to leave again I feel the old me emerge again and the fight returns and I can take the right measures to look after myself. It’s a very strange place to find yourself. A place that is great to come out of 🙂

I can’t even imagine that. No pain meds help? I know for my migraines, the level of pain relief that would be required I’m resistant to applying so I understand if that’s your problem, too. I am so happy you’re at a good point this week.

Thanks Jacqui. I do have extra pain meds for the breakthrough pain which I take but the day is still a battle and I don’t have the energy to do the things I’d normally do because the pain is still fighting to get through. It’s an exhausting roller coaster. Waiting and looking at the clock for when I can take some more because the pain doesn’t wait!

It’s too easy to offer sympathy. I’ve fought health problems all my life but nothing like yours, I have lived with someone who has battled pain and lost years – not days or weeks – to it. The only thing I can say is that most of the online friends you make may be true friends, but they’re not physically in your life. All the stuff that goes with writing and promoting writing can be fun and good business. But in the end, and there will always be an end, none of that matters. What matters is your family and loved ones – and your writing. If I could offer advice, I’d say husband your strength (that’s an old fashioned way of saying conserve it and spend it wisely) and spend it on your loved ones -and your writing.What you leave personally will reside in your loved ones. What you leave the world will be found in your writing.

Thank you Daniel. I’m sorry you have your own health issues and that you have lived with someone who has suffered so much. Compared to the person I used to be, my good days are nothing. But you’d need to see a previous post to understand that. I know what you mean about in the end but I fight to live my life as fully as I can as I’m still relatively young. I don’t want to bow down to this and hate that I have to pace myself as much as I do. I’m bitter towards my own body and how it failed me. But yes, my family are so important to me and they are truly wonderful and we treasure each other.

That sucks to have happen. I hope you and your doctors can figure out a way to make it stop or happen less. Either way, I enjoy seeing you online when you’re able to be. Makes those moments more special. =)

Welcome back. Rebecca, so sorry to hear of your troubles. it must be awful. Depression has a similar effect on me (withdrawing, unable to do anything) but mercifully, no physical pain.
If one more person tells me ‘that what doesn’t kill you, makes you stronger, I think I will scream!

Rebecca, I don’t know what to say except now that you have “climbed back out” and you are “me again” I hope you stay that way for a long, long time and that you have boundless energy to do the things you want to do for yourself and your family and be happy as you deserve to be.